We went to 7C this morning and I asked the nurse if she could check and see what time Tanner's appointment was with the Dr. on Thursday. She came back in and said it was for 11:30 a.m. this morning (by then it was about 11:10 a.m.) instead of Thursday. Tanner was dehydrated and needed a fluids transfusion so by the time they were through, it was noon before we made it to the doctor's office.
Dr. Barlogie is out of town so we saw Dr. Naier. I love Dr. B to death, but Dr. Naier sat down and took his time and just answered our questions. No hurrying or running off to other rooms (though we did have to wait about an hour and a half to see him). We asked about the lesions in Tanner's bones and the fact that first they told us they could heal the lesions, and then we were told if there's a lesion in the bone, there will always be a lesion in the bone. He said that yes, there would always be some kind of spot on the bone wherever there's a lesion, but that they would get smaller. He said there are drugs they can give to help harden the bones and that we would talk further about them after Tanner finishes Consolidation (75% strength chemo) when we come back.
I asked about the lesion in the right femur and if he thought it would heal enough on it's own and he looked at the latest scans and said that lesion was nearly 10cm and would most likely need surgery but that it would be something we would need to discuss with Dr. Nicholas.
He said the latest MRI that was done last week while Tanner's system was supressed showed that things were "stable" and that it would take about 1 to 1-1/2 years for Tanner's lesions to heal to their full potential.
He said something about Tanner's Lambda Light Chains still being around a "5" and that there might still be a "little cancer" there and that it would be something "we would watch" and give him some time to recover from treatment and see how things progress. I asked if that was common and he said "we see it sometimes". This will have to be something I will for sure make a point to discuss with Dr. Barlogie when we come back from this next break.
His plateletts rose to a 37 but the doctor said that they could go ahead and do a platelett transfusion in the morning to raise it on up to 50 and send him to the hospital and have the triple lumen lines out. He said we would need to come back the first week of December for his Consolidation Chemo.
The thing is, Tanner has to be cross matched for plateletts and has to take pre-meds because he has an allergic reaction. We will go up in the morning so he can have his pre-meds and transfusion and depending on if he has a reaction or not, will have his lines removed and we will head back to Texas. Depending on how long that takes, we will go home either tomorrow afternoon or Friday morning. We will just see how things go tomorrow.
As we were leaving the office, Bonnie (Dr. B's assistant) saw us at the elevator and told me she heard that Sandra (the insurance lady) said that she was having to fight with our insurance company. I asked if they turned coverage down again, and she said she didn't know for sure but that she was told that they are still saying the treatment is experimental and is not "standard".
She recommended that we start writing letters to the Dept of Insurance, our state representative, and HHS. She said that they would continue to fight also, and that many times they win those fights. I just pray with all I've got, that this is a fight we will win for Tanner also.
What will we do if we have no insurance coverage for all of this treatment Tanner needs in order to save his life?? I told her that I will start contacting everyone I can think of to try and help us with these insurance issues during these next few weeks while we are at home.
I think you should start at the top with Obama then work your way down. I would also contact all local and national media. (I think your boss would be good at this) What happen with the Today Show? I know prayer will continue to take care of Tanner but we should share his story with the rest of the world. Specially with health reform being a number one topic in the country right now. Everyone needs to hear about his insurance. Love ya, Cathy
ReplyDeleteI am so glad you all are coming home. I am also glad to hear that the lesions will get better. I absolutely understand how anxious you are to get home after being gone for so long. Drive carefully and I pray for a safe trip for you all. We definitely need to write our representatives. We can write one letter and copy it to numerous others. I agree with Cathy in contacting local and national medial. Let's make this big. See you guys soon. We love you, Granny and Pop
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